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Is NED really NED

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I was thinking about this subject for a few days now but reading of jane283 dad's recurrence and then steved reminded me of his 7 recurrence.

i guess my one year recurrence post surgery is in a different category.

so at present all scans clear, tumour marker ca199 and cea all normal.

so per conventional i am NED, no treatment options offered, except sit back and get on with life.

 

in the alternative space my ctc count is dangerously high, also my tktl1 indicates tumours giving of this protien.

so i have a very real and measurable risk of recurrence. So relying on conventional definition is setting us up for recurrences.

 

briefly the therapies to manage this risk while building peak health is an aggreesive immunotherapy regime using removab, vogel embolisations of the areas the tumours used to live in, dendritic cell vaccine, and a massive supplement regime targetted at weaknesses in ctc's. my rgcc molecular test is guiding these strategies. all the tests are on the blog.

warning i have basically become alot more fanatical, so i basically only post here brief summaries and offer general support. see my blog for full details, but i have warned my conventional friends not to really go there because you will not like what you read, what i say and what i think is best for my survival.

so we have two definitions of ned, CNED and ANED for conventional and alternative. In my heart, any friends who get to NED in the conventional space, i feel are not NED until they have a ctc test and a count of 1 or 0, when the metastatic risk is then negligible. thats my target and understading.

to me, NO EVIDENCE OF DISEASE means what it says, it implies active disease, ctc's are active. so previously i have said i am NED, now i retract that statement, i will not ne NED until my CTC's <=1. 

one caveat, i have a supplement strategy to stop these stem cells from being activated using mcp and sfn and many other supplements and life style therapies as well as the immunotherapies in case a small met starts. so the strategy is two pronged, reduce ctc's if possible, inactivate them, and keep on monitroing them and any tumour burden.

maybe this level of effort is required to stay NED in the presence of what was extensive peritoneal, liver and lung disease. now granted these cells are now residual disease.

but we all know it just takes one dam tumour cell, start a met and kill us. we have to fight fire with fire. i know its not fair using all these therapies against one or two tiny cells. well who said cancer was fair any way.

basically this is my staying ned plan, its developing day by day here. my disappointing second removab result, indicates just how blessed i have been to have such a good immune response initially. the take home message for all considering removab, is don't waste what be your only shot at cure, by doing these therapies half assed. give this stage of your recovery plan 1000% effort. sorry yes i am clearly advocating the obsessive approach.

if this post causes any heart ache forget it, and follow your doctors advice.

hugs,

pete

ps http://health.ucsd.edu/news/2011/Pages/11-14-new-target-tumors.aspx i have emailed them to see if i can get the drug

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

i appreciate your posts as i am always open to new ways. ( not just cancer tx)  i am so glad the path of tx you have chosen is working for you. you are one brave man!!! and i thank you for that. take care & keep posting.

prayers

judy

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i said my prayers in the sauna, lots of prayers, the rosary, i am a catholic. i include all my friends, but especially you. 

brave is easy when we got no choices and our back is against the wall.

hugs and prayers also,

pete

janie1
Posts: 753
Joined: Apr 2011

Pete, how could you tell that the 2nd removal treatment was disappointing?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i am a little disappointed, i had a minor temp rise, that was all.

precisely why the lack of response, i will ascertain if a can and share.

but the point from the experience is make the first one count, it may be your only shot. the same goes with other immunotherapy solutions.

hit the illness from every conceivable angle from god to rafremovab etc etc etc etc

its still possible to have an immune response, but the results take weeks to come back.

next dose monday 10 mcg, a double dose.

hugs,

pete

luvinlife2
Posts: 172
Joined: Jul 2012

Is it possible that your immune system is working so well that it counter acted any severe response to the removab?  You did have a temp rise...could that not be justified with the small amount of cancer left to kill?   Or does it work the other way, ie.  you get a huge response when the immune system is working well?  Smile

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

its possible immune system, is working so well. removab is percieved as a foreign to the body, eventually you become antibody positive.

now i am supposed to antibody negative at this point. so i do not understadn the lack of response.

the minor temp rise could be like you said, i will get some results over the next few days. in a few hours 20mcg i think should blow my sox off.

the huge response intially sets the stage the immunological repsonse over the next few weeks., but a huge initial response does not guarantee massive tumour die off.

have a read of the blog, i just researched what it means to be hpv18 positive, i am , it the reason i likely got this cancer. and possibly a plausible explanation for my response.

great thoughts thanks. wish me luck today.

hugs,

pete

bailee2012
Posts: 61
Joined: Jul 2012

please do not take this the  wrong way as it is honestly just a question.  i truly admire your strength in fighting this.  my question is "if you recure or don't get positive results, do you have to pay the treatment amount all over again or will they continue to treat you?"

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i pay the bill, regaedless of outcome.

hugs,

pete

renw's picture
renw
Posts: 282
Joined: Jan 2013

I have never heard of any cancer treatment, clinic, cancer supplement vendor, hospital or doctor ever offering a money back guarantee. I guess they would go out of business if they did. :)

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i have dreams of setting hallwang style clinic in australiait a nice idea.

hugs,

pete

jane283
Posts: 35
Joined: Feb 2013

That a great idea...wish you luck...

even if you can make one person's life better,you've really LIVED. :)

 

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I'm getting confused, as I thought you had already taken multiple Removab treatments.  Can you summarize exactly what you did at Hallwang, and when, prior to becoming "NED"?  Was it just chemo-embolization and the DC vaccine, or was it those two and one Removab treatment?  Regardless, it sounds almost miraculous that they were even able to get you tumor-free based on your condition going in.  Aslo, I'm not sure that a lack of side effects is equal to lack of efficacy.  It may just be that there are so much fewer tumors for the Removab to attack that your body is responding differently this time.  You sound disappointed, but the docs at Hallwang never promised a cure I assume?

Tedd

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

see the media release on my blog, at the bottom is the german medical report from hallwang with dates and times of treatments.

in summary three removab's 5mcg, 10mcg, 10mcg. three vogels, one vaccine.

i have used NED initially based on our commonly accpted convnetional definitions.

now i am back trying to stay NED, getting advice and opinions from a range of clinics.

but given NED equals no evidence of disease, i consider the ctc's as evidence of disease, so i am not  NED yet. that is why i am  here, for as long as it takes.

the side effects of removab are driven by the ecamp receptor expression throughout our body in stomach, liver , blood vessels etc. see the side effects that phillg found for me all those months ago.

to generate an immune response, to get the tumour killing effect that drove my cea from 81 to 1771 in a week post removabthats what i want. that first week i was so drained, barely alive, tired and overloaded, my liver hammered by the tumours being killed, and also by detox needs. all that dead tumour tissue has  to be got rid of. i was jaundice etc etc etc.

i am still confronted by the reality of this illness and our mortality. the gentleman John who had the serious removab style response of Friday ( but not removab ) while i had no reponse is in hospital in intensive care, his life support being turrned off soon per his wishes. the conjunction of multiple brain mets from melanoma and possibly the therapies here, maybe not, well soon this wonderful aussie I just really met for 3 days will be at peace soon. This is the nature of the truth of our cancer challenges. I wished he got here much sooner, maybe his outcome would have been better, maybe not. 

I am not really down, I am focused, I am pushing ahead deeper into therapies and research and training than I ever thought possible. I need more sleep. I won't really be able to rest until my ctc = 0 in my mind, and that asir says, we have done all that can be done. how long i have to go, well this part of the path is like the mountain climb.

so effectively I reached the sumit of my everest, i just i realised now getting to the summit is 50% of the battle, getting backdown of the mountan alive and uninjured the other 50%. this final 50% is before me now.

the journey is a marathon not a sprint as we say. to its starting tto look like an ultra marathon.

your comment about lack of side effects equal efficacy is spot on, but i would prefer the side effects. understading the nature of the response and what it implies going forward an unravelling process. the current plan to enhance my p53 suppressor gene function to guarantee apoptosis the current priority in therapy beyond removab here at hallwang. its exciting times, I am enjoying the medicine. I am glad to have met john, to spend a few hours and a few meals, to sit besides his smiling but torchored face in the infusion room an experience i will carry with me.

his decision to do a sydney based immunotherapy trial prior to coming here, telling for me in many respects i won't go into here, except to say my preference to do german style therapies first and conventional second. I hope this does not upset anyone, its just my opinion based on my observations. and i am observing and taking all this rich experience in, at many many levels. my copious blogging of late , my attempt to record a very intense phase of my life and spare my dear friends here my radical and extreme views.

I am literally researching my butt off, I am seeing asir tomorrow to discuss the rgcc results and the difference between the tests and implications for my staying ned plan.

Hugs,

Pete

 

PhillieG's picture
PhillieG
Posts: 4666
Joined: May 2005

"you will not like what you read, what i say and what i think is best for my survival"

For Pete's sake Pete! It's what you think best for YOUR survival. I don't follow your blog but you don't seem like you'd badmouth people for their choices. Everyone gets to choose their path and unlike gravity, which while we're on Earth, will always make objects fall to the ground the same way, different paths give different results to different people. The only time we run into trouble seems to be when people say they can cure cancer which thankfully is not something we have happen. My opinion is that Only a Fool would Claim such a thing and Only another Fool would Believe it.

As far as NED goes, I think it's self explanatory. No Evidence of Disease. I don't see how there could be any interpretation of it. It doesn't mean cured, it doesn't mean not cured. It is what it is...

 

Cold

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

but it hurts to realise how powerless i am to watch a lovely dad die right next to me. his brain fail when the tumours inside it, come under a last minute attack.

everywhere i look, at myself, at my friends everywhere, its cancer cancer. it is what it is, i know tht phil.

basically i am hpv 18 positive, it likely explains carcinogenisis in my case i think in many our our cases.

but again conventional does not test for this. 

i loved what you said about gravity.

basically i am introducing ctc counts as a new test to determine our ned status.

hugs,

pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

Pete, you said you were going to do two supplements  MCP  and Sfn,  what is sfn???  

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

http://petertrayhurn.blogspot.de/2013/02/sulforaphane-and-stem-cells-pancretatic.html

i updated this for you, read the book, i would be interested in your thoughts.

always lots of hugs.

pete

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

Hey Phil- at the risk of sounding like a complete tech novice, may I ask how you get the picture embedded in your comment?

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

is simply that it is better to be it than not.  It may mean the cancer is gone, it may mean that it is simply not visible or detectable by our available technology, but either way, it means we are being given more time, and that i will happily take!  AA

PS  I asked my oncologosit a couple of years ago about the ctc test, and he said he didn't use it because he felt it wasn't useful.  According to him, even if it should show zero, there could still be cancer cells circulating in the blood.  Don't know if that's true or not, having not done any further research on it.  I suppose if the test did pick up cancer cells, then you would have a confirmation that the cancer is still active, and then you move into the realm of whether or not to continue whatever treatment you happen to be on, so in that regard it could prove useful.  It seems to me that a strong immune system might also be able to address a few circulating cells, but that's not based on any research, just a guess.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

like at my ctc test, its alot more comprehensive then a number. have a read of the rgcc tests in my medical records on my blog, you will be amazed, i think

i like your idea about the immune system eating a few circulating stem cells, i wonder about whats required for the immune system to take out stems cells in the blood which is one case and then the immune system taking out micro mets when a stem cell takes root. really interesting ann, always helpful.

one day we will probably know the answer, if we find the answer, may may live long enough to share it.

hugs,

pete

 

janderson1964's picture
janderson1964
Posts: 1562
Joined: Oct 2011

Philleg is right. NED means no evidence of disease not cured. I think cure is a bad and misleading term for most of us but NED is a fair term. NED means that there is no disease detected with our current technology but it could still be there dormant and below the radar. That is one of the most frustrating parts about cancer to me.

thingy45's picture
thingy45
Posts: 571
Joined: Apr 2011

Hello All,

I am not always posting but more a lurker. My take on NEd is that at this moment..... they cannot detect any evidence of cancer in "me" I am NED.That said...... for 6 years I complained, saw 2 different specialist and 6 doctors, all claimed it was IBS, Lactose intollerant, by the near end of things Crohns was mentioned, until the total blockage and 10 lbs of cancer was removed high up on the left side. They all missed it, claiming I was NED then, because it was in a different place then normal. Tests had shown there was blood at the time in excrement, but many excuses giving by them.

I am lucky to be here and declaired NED for NOW. Yes, for now, because we all carry cancer cells in our body. We never know when they will strike and where. Lately I hear of many younger people with cancer in bone and blood, the cancer of Kahlen I had never heard of etc etc. Are we really ever totally NED?

Same with heart decease, many saw doctor and was given clean bill of health, 3 days later, BANG, heart attack, go figure!

We all have choices in life which path to walk, in career, marriage and also in health. Some choose the conventinal way some choose the "natural" path. Who is to say that one path is better then the other? Dr's will state the conventional way others say the old chinese way. It is our personal choice,.

I have followed Pete from the start, so interesting and helpfull his posts and blogs. New ideas etc etc,sometimes he received flag from  us sometimes coodo's but all in all he is a forrunner in my book. Trying to stay alive and healthy as long as possible.

My next Ct scan is next month. Am I nervous? You bet. You never know when you are at the end of the line. CEA has been good marker still in the 1.1 range was 18 when diagnosed as stage III. So I am hopefull and feel very blessed.

Keep up by keeping us posted Pete, you have my full support, prayers and love for you and your family,

Hugs, Marjan

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

goodluck with your up coming tests.

today i tried a second dose removab, in the second course. no response i susepct again. these therapies challenging in many ways.

no response is challenging.

i got an cea back today around 7.4. again a different german lab, the different clinics use different labs. i test get my ass tested. i am getting a sense about all the different labs here and there.

i skyped my family today, i hope they come here soon, i miss them so much.

i still have active disease, i am blessed to be here fighting.

hugs,

pete

ps this strategy may seem to out there but here goes.

"i joyfully accept the no response, the therapy failure"

this way no result of a therapy or a test will cause upset. this attitude protects my soul from the harm of failure. it works for me. but its extreme, i means fully accepting my approaching mortality, then however many more days is a wonderful, joyous bonus. the point for me is that its free of expectation. its just my way of coping with all the loss around me.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

agreed, about cured and ned, so for me for the tests i have access to i am not ned.

measuring stems cells, well they are proof of disease, its remmnants.

lets consider the word frustrating, lets change it to challenging. it works for me, i cannot reduce my focus on curative attempts until extended ned.

which after the magical 5 years means cured, lets leave cured as the conventional dodgy definition.

i prefer my new goal extended nedness. and the peace of mind that follows having every accessible test clear, and a targetted set of therapies to keep our biology 

primed at maximum health, to maximise our immune function and our chances of survival.

hugs,

pete

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